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symptom free for 17 years and wondering about copaxone?
Hi, new here. I had my first episode with ms at 18 then another minor "sensory disturbance" at 21. after 17 years of being 100% symptom free i have just been officially diagnosed with ms after having a very minor "sensory disturbance" Went for mri's and they of course show brain lesions but there are 2 lesions on the spine. The neuro wants me to go on copaxone. Here is my question, what would you do if after 17 years of being symptom free? take the copaxone or not? I am very grateful that i have been asymptomatic for so long and I am not depressed. It is what it is and it could always be worse, I am just very confused and not certain about the meds.i am contemplating going the vitamin and supplement route in addition to the copaxone or in place of it. any answers would be much appreciated. thanks so much! good luck to everyone on this forum. = ) whoops, by the way, happily married with 3 children.
I was just recently dx with MS. Going over my history, it is apparent that I have had MS for around 20 years or so. The symptoms were so mild that by the time I thought that maybe I should see a doctor about them after all, they would disappear. All this changed last summer. I woke up one morning and knew that things would never be the same again. I wish now that I had not been so stubborn over all those years and had seen a doctor about them. Anyway, I think you are making the right decision and it is the same one I came up with. MS is so unpredictable and you just can't take the chance it will stay benign.
Blessings!
Blessings!
You have been given some great advice here by people much more knowledgeable that myself so I won't try to offer any more.
I will just tell you my experience. I was diagnosed with "benign" MS in my early forties - and it did heve a benign course for 14 years so I didn't seek any further medical advice or treatment after my diagnosis (except for a spell of optic neuritis, which by the time I managed to get an appointment with my neuro about 8 weeks later was better).
However just over 2 years ago I started to get lots of symptoms, now I have difficulty walking, my left leg and foot are very weak and my balance is terrible. I still work part time but I struggle to get there.
My point is that if I had known about the DMDs before all this started I would have pushed (and pushed!) to get them. I am now on betaseron and have been for about 7 months. I truly believe it has halted the progress of my disease but I wonder how much better I might be if I had started taking it 2 or 3 years ago.
I am glad to see you are seriously considering the copaxone and wish you well.
Mand
I will just tell you my experience. I was diagnosed with "benign" MS in my early forties - and it did heve a benign course for 14 years so I didn't seek any further medical advice or treatment after my diagnosis (except for a spell of optic neuritis, which by the time I managed to get an appointment with my neuro about 8 weeks later was better).
However just over 2 years ago I started to get lots of symptoms, now I have difficulty walking, my left leg and foot are very weak and my balance is terrible. I still work part time but I struggle to get there.
My point is that if I had known about the DMDs before all this started I would have pushed (and pushed!) to get them. I am now on betaseron and have been for about 7 months. I truly believe it has halted the progress of my disease but I wonder how much better I might be if I had started taking it 2 or 3 years ago.
I am glad to see you are seriously considering the copaxone and wish you well.
Mand
Thanks for giving me something to smile about - what a great way to end the day to hear you are going to go on the side of caution and take the DMD's. Now you better stick around and keep us posted on how this decision plays out for you .... please!
stay well,
Lulu
stay well,
Lulu
Thank you all so much for your replies. Everyone seems to have a conflicting opinion on what to do and not do that is why I came here. It is an entirely different story when you are getting opinions from those "who have been there" I truly apprecaite you taking your time to help me with this. I will for sure be sticking around!! thanks again! I believe i will be making the phone call to the ms center tomorrow to tell them to send the meds.
Hi, and another welcome to the forum. I do hope you have landed in a good place that will give you the info and support you need without bombarding you with heavy-handed tactics. This is a good place.
I see your basic questions as these. You had really minimal symptoms 17 years ago and now have another pretty minimal symptom. You did get a neuro follow up and now have some more than impressive lesions. So, up to and including now you have had a "benign course" with your ms. Your neuro is recommending a DMD, Copaxone, but you are wondering if 1) Is it likely that you will continue to have really minor problems ?and 2) is it too late for the DMD to have any effect?
The first question is one that would have had a clearer answer a decade or so ago. Do you have Benign MS? Benign MS was a favorite diagnosis up until the last couple years. Most good docs (including yours, I gather) would now say that there is no such thing as Benign MS. A person can have a "benign course." But, no one can know until death if the course will "stay" benign the entire time. There are very good studies, looking at people with MS who were given the diagnosis of "Benign" and seeing how they were doing 2, 3 or 4 decades after diagnosis. A disturbing number of them (upwards of a third) were having significant cognitive problems or needing assistance to walk.
The best benchmark they have found is how the person is doing at 15 years after diagnosis. If the disease was still acting benignly then they were "likely" to continue with that pattern. There was still a percentage that would have the nasty part of MS rear its head and take them down. So, still no guarantees.
Most of us with any measure of disability would do anything to prevent further disability. It can be really awful.
I am worried by the spinal cord lesions you have. It seems that you don't have much in the way of symptoms from them, and this is lucky. Lesions in the cord and the brainstem can be the most disabling. I hope that you consider the appearance of lesions as evidence that the disease is advancing. It's just that the lesions haven't hit a big target yet. We all know that there is not a good correlation between symptoms and where the lesions are. Since your doc is urging you to begin Copaxone, then he clearly is concerned about the disease advancement.
There is an essay on the correlation between lesions and symptoms in our Health Pages:
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Lesions-vs-Symptoms/show/61?cid=36
The second question is whether the meds will help you? All the literature says they work better, the earlier you take them. That is true. The current DMDs affect the inflammatory (relapsing) part of the disease which occurs earliest in the disease. But, the term "earlier" is quite relative. Taking them now, 20 years into your disease IS early compared to taking them 40 years into the disease. And "now" is what you have. Will they be effective? The odds are that you will probably have some effect from them. Clearly you are still in the relapsing/inflammatory phase of your MS and that is what the Copaxone and others has its effect on.
So, I would say that the chance the med will help you is similar to the chance that it can help others who are still in the relapsing phase. Plus, you don't have a huge amount of disease to stabilize. Man, given those two things, and if you want the best chance of a future being able to play with your children and grandchildren, I would jump at the med.
It is true that no combination of supplements has been shown to actually change anything in MS except the way you feel. The arguments that they do are based on theory that goes like this. This supplement does this in the lab or is used for this kind of thing by native peoples. MS is one of those kinds of things that this should help. We have lots of stories of people improving with this supplement. Therefore, this is a good treatment.
If you had started a supplement program 17 years ago, and were without symptoms now, you would say it worked. But, the statistics show that as many people "without" taking that supplement program also remained without symptoms for 17 years. So were you just in a spontaneous remission (like the others) or were you well because of the supplements?
I have no problem with supplement regimes at all. I take several. But, I think it is important in a disease like MS, that can spontaneously go quiet, that we realize that the disease may not be responding to what we are doing. It may be following its own path.
There is actually good, hard evidence that the DMDs work to our benefit a good percentage of the time. My vote would be to do both. A caveat here is to be very careful with herbs and supplements that are know to have a "boosting" effect on the immune system. Our immune systems are already "boosted." They are so boosted they have begun attacking our own nerves. They are not weakened as so many people think.
So, the "odds" are in your favor, but what odds are you willing to play that you will be one of the very small percentage of people that escapes? You are in your mid-30's. You have another 50 years for this disease to have its way with you. That is a long time to defy the odds which get smaller and smaller as the decades pass.
Well, probably far more than you wanted to know. Sorry. I am a physician with MS and I sometimes go overboard with the info. But, I hope this helped some.
Welcome again! I hope you stay. We have a lot of great members - lots of support, experience and fun.
Quix
I see your basic questions as these. You had really minimal symptoms 17 years ago and now have another pretty minimal symptom. You did get a neuro follow up and now have some more than impressive lesions. So, up to and including now you have had a "benign course" with your ms. Your neuro is recommending a DMD, Copaxone, but you are wondering if 1) Is it likely that you will continue to have really minor problems ?and 2) is it too late for the DMD to have any effect?
The first question is one that would have had a clearer answer a decade or so ago. Do you have Benign MS? Benign MS was a favorite diagnosis up until the last couple years. Most good docs (including yours, I gather) would now say that there is no such thing as Benign MS. A person can have a "benign course." But, no one can know until death if the course will "stay" benign the entire time. There are very good studies, looking at people with MS who were given the diagnosis of "Benign" and seeing how they were doing 2, 3 or 4 decades after diagnosis. A disturbing number of them (upwards of a third) were having significant cognitive problems or needing assistance to walk.
The best benchmark they have found is how the person is doing at 15 years after diagnosis. If the disease was still acting benignly then they were "likely" to continue with that pattern. There was still a percentage that would have the nasty part of MS rear its head and take them down. So, still no guarantees.
Most of us with any measure of disability would do anything to prevent further disability. It can be really awful.
I am worried by the spinal cord lesions you have. It seems that you don't have much in the way of symptoms from them, and this is lucky. Lesions in the cord and the brainstem can be the most disabling. I hope that you consider the appearance of lesions as evidence that the disease is advancing. It's just that the lesions haven't hit a big target yet. We all know that there is not a good correlation between symptoms and where the lesions are. Since your doc is urging you to begin Copaxone, then he clearly is concerned about the disease advancement.
There is an essay on the correlation between lesions and symptoms in our Health Pages:
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Lesions-vs-Symptoms/show/61?cid=36
The second question is whether the meds will help you? All the literature says they work better, the earlier you take them. That is true. The current DMDs affect the inflammatory (relapsing) part of the disease which occurs earliest in the disease. But, the term "earlier" is quite relative. Taking them now, 20 years into your disease IS early compared to taking them 40 years into the disease. And "now" is what you have. Will they be effective? The odds are that you will probably have some effect from them. Clearly you are still in the relapsing/inflammatory phase of your MS and that is what the Copaxone and others has its effect on.
So, I would say that the chance the med will help you is similar to the chance that it can help others who are still in the relapsing phase. Plus, you don't have a huge amount of disease to stabilize. Man, given those two things, and if you want the best chance of a future being able to play with your children and grandchildren, I would jump at the med.
It is true that no combination of supplements has been shown to actually change anything in MS except the way you feel. The arguments that they do are based on theory that goes like this. This supplement does this in the lab or is used for this kind of thing by native peoples. MS is one of those kinds of things that this should help. We have lots of stories of people improving with this supplement. Therefore, this is a good treatment.
If you had started a supplement program 17 years ago, and were without symptoms now, you would say it worked. But, the statistics show that as many people "without" taking that supplement program also remained without symptoms for 17 years. So were you just in a spontaneous remission (like the others) or were you well because of the supplements?
I have no problem with supplement regimes at all. I take several. But, I think it is important in a disease like MS, that can spontaneously go quiet, that we realize that the disease may not be responding to what we are doing. It may be following its own path.
There is actually good, hard evidence that the DMDs work to our benefit a good percentage of the time. My vote would be to do both. A caveat here is to be very careful with herbs and supplements that are know to have a "boosting" effect on the immune system. Our immune systems are already "boosted." They are so boosted they have begun attacking our own nerves. They are not weakened as so many people think.
So, the "odds" are in your favor, but what odds are you willing to play that you will be one of the very small percentage of people that escapes? You are in your mid-30's. You have another 50 years for this disease to have its way with you. That is a long time to defy the odds which get smaller and smaller as the decades pass.
Well, probably far more than you wanted to know. Sorry. I am a physician with MS and I sometimes go overboard with the info. But, I hope this helped some.
Welcome again! I hope you stay. We have a lot of great members - lots of support, experience and fun.
Quix
Yes, you have definitely landed in a safe place. But don't expect any of us to say its ok to go without the DMD of your choice. It is just too much of a gamble - why would you risk it?
I have had no problem with copaxone (yet!) and have been on it for over 6 months now. Wow, that sounds like a long time to me. I had stinging and pain at first, but now its no big deal and is just part of my daily routine.
Any of the DMDs are worth the aggravation of the injection if it keeps you out of a wheelchair, keeps you mobile on your own two legs, allows you to take care of your own hygiene needs, and all the other assorted things that can go wrong with advancing MS.
Its not great, but the DMD's are the best hope we have right now.
Think it over long and hard,
Lulu
I have had no problem with copaxone (yet!) and have been on it for over 6 months now. Wow, that sounds like a long time to me. I had stinging and pain at first, but now its no big deal and is just part of my daily routine.
Any of the DMDs are worth the aggravation of the injection if it keeps you out of a wheelchair, keeps you mobile on your own two legs, allows you to take care of your own hygiene needs, and all the other assorted things that can go wrong with advancing MS.
Its not great, but the DMD's are the best hope we have right now.
Think it over long and hard,
Lulu
Hi again.
Twenty years ago there were no drugs for MS, just things to treat symptoms. Now it's a whole new ballgame. There are much better tests, better MRI machines, better everything.
Not everyone reacts well to Copaxone. Take me, for example. After several weeks my minor injection site reactions turned into a horrible allergic response, with hives, rashes, bumps and hideous itching. I thought I'd go nuts.
However, Copaxone's not the only game in town, luckily for me. I've been on Avonex for 9 months now, and am doing quite well. There are ways to overcome its side effects, and the big majority of the time I have no effects at all. (Sleep and Aleve take care of the problem totally for me.)
You will find many here who do well on Copaxone, others who do equally well on one of the interferons, including Avonex. There's no one right answer. The only wrong answer, in my opinion, is to take risks that can be avoided. The side effects of the DMDs dwindle into nothing as compared with the 'front effects' of MS. There are plenty of members here who devoutly wish they had chosen a DMD years ago. Some didn't have a choice then, and some, our Limbolanders, still don't have a choice.
Well, that's my piece. I hope others will comment here.
ess
Twenty years ago there were no drugs for MS, just things to treat symptoms. Now it's a whole new ballgame. There are much better tests, better MRI machines, better everything.
Not everyone reacts well to Copaxone. Take me, for example. After several weeks my minor injection site reactions turned into a horrible allergic response, with hives, rashes, bumps and hideous itching. I thought I'd go nuts.
However, Copaxone's not the only game in town, luckily for me. I've been on Avonex for 9 months now, and am doing quite well. There are ways to overcome its side effects, and the big majority of the time I have no effects at all. (Sleep and Aleve take care of the problem totally for me.)
You will find many here who do well on Copaxone, others who do equally well on one of the interferons, including Avonex. There's no one right answer. The only wrong answer, in my opinion, is to take risks that can be avoided. The side effects of the DMDs dwindle into nothing as compared with the 'front effects' of MS. There are plenty of members here who devoutly wish they had chosen a DMD years ago. Some didn't have a choice then, and some, our Limbolanders, still don't have a choice.
Well, that's my piece. I hope others will comment here.
ess
thanks so much for your input. i really tried to keep my post brief before so i left out quite a bit of info. the first incident i had was after a bout with meningitis so i did learn everything there was to know 20 years ago about ms (before internet). i went through the rounds of spinal taps (3 negative) mri's 1 negative and the second did not have enough lesions for a conclusive diagnoses. in the meantime my sister was diagnosed with ms about a year after the onset of my problem which was minor tingling in my pointer finger and somwhat up my arm. after oral predisone it went away. the second episode was right before my wedding but again, mild tingling. after that i got pregnant with my first child and kept up with neuro checkups through my second pregnancy and after my third i suppose because i was symptom free and busy with 3 children it somehow didn't occur to me to go for a checkup (of course in hindsight it seems ridiculous to have gone all that time without being checked) what brought me back to see my neuro was a cold patch on my foot the size of a silver dollar that didn't go away. he sent me for the mri's and saw the lesions on my spine and immediately started me on in home solu medrol. i am again, thankfully symptom free. my sister tried the copaxone and it was not a good drug for her. i am grateful that the ms specialist i was referred to is open to supplements and gave me a list to go on immediately while making my decision. I seem to be the "go to" person for everyone else and I usually have very strong gut instincts. I honestly do not know why i seem to be having such a hard time making this decision. I appreciate your honesty. I am very interested to see what people with ms think about this. I am very grateful to have found this board. It almost feels like i landed in a safe place. i think that covers everything.....lol
Hi and welcome to the MS forum. Ess has pretty much nailed this answer and there isn't a whole lot more to add. I would not gamble on the side of luck - not that I'm unlucky but I haven't won the lottery yet - to protect me from my MS symptoms turning into something uglier.
I'm sure you understand that these physical changes can happen literally overnight, without provocation, and without warning. Once the damage is done, there is no repair work to fix it.
If you decided to take the copax and supplements, be sure to discuss the supplements with your doctor so that there is no contradictory problems.
I hope you will come back and share more of your journey as you make your decision,
Copaxone user,
Lulu
DX'd RRMS, 9/08, at age 53
I'm sure you understand that these physical changes can happen literally overnight, without provocation, and without warning. Once the damage is done, there is no repair work to fix it.
If you decided to take the copax and supplements, be sure to discuss the supplements with your doctor so that there is no contradictory problems.
I hope you will come back and share more of your journey as you make your decision,
Copaxone user,
Lulu
DX'd RRMS, 9/08, at age 53
Hello and welcome to the forum. I hope you'll find your time here well worthwhile. A great many of us have been here a long time because it's a great forum, full of knowledgeable and compassionate people.
You will likely get quite a few comments and ideas about what your next step should be. Here's mine: I think you're amazingly fortunate to have gotten this far unscathed. Now it must be catching up with you at least a bit or you wouldn't have sought neuro help. There are no magic bullets in MS, so we have to go with the odds, with what has helped most people over many years. The answer to that is the disease modifying drugs, of which Copaxone is one. There are no guarantees, but there are odds, and they strongly favor your taking one of these meds.
It's all well and good to try vitamins and supplements. Within reason they will do no harm. But there is no evidence at all that they will help you. By evidence, I mean scientific proof, which is all we have.
I urge you now to become more knowledgeable about MS. A good place to start is our Health Pages (see upper right of screen). Please take some time to read there, then come back here and ask any questions you may have.
Again, welcome.
ess
You will likely get quite a few comments and ideas about what your next step should be. Here's mine: I think you're amazingly fortunate to have gotten this far unscathed. Now it must be catching up with you at least a bit or you wouldn't have sought neuro help. There are no magic bullets in MS, so we have to go with the odds, with what has helped most people over many years. The answer to that is the disease modifying drugs, of which Copaxone is one. There are no guarantees, but there are odds, and they strongly favor your taking one of these meds.
It's all well and good to try vitamins and supplements. Within reason they will do no harm. But there is no evidence at all that they will help you. By evidence, I mean scientific proof, which is all we have.
I urge you now to become more knowledgeable about MS. A good place to start is our Health Pages (see upper right of screen). Please take some time to read there, then come back here and ask any questions you may have.
Again, welcome.
ess
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